My Day on the Pediatric Palliative Care Ward

Last March, I walked into the hospital as a medical student rather than a patient.

It was my first clinical experience since being diagnosed with a third recurrence of my brain tumor one year earlier. I was also entering a very different setting from the family medicine clinic where I had previously worked as a medical student. This time, I would be shadowing a palliative care attending physician at a pediatric hospital.

Palliative care is a specialized form of care for people living with life-threatening or life-limiting illnesses. It is often mistaken for hospice, but it can be offered at any point in a patient’s journey and alongside any treatment goal, from cure and life prolongation to comfort.

Its purpose is to reduce physical, emotional, mental and existential suffering. It also helps patients and their families navigate life’s uncertainties in the face of serious illness.

Our lives are like a bridge. Usually, the foundation is strong enough to support us through life’s ups and downs. When serious illness occurs, however, its physical and emotional weight can cause the bridge to crack.

Palliative care provides scaffolding to help hold that bridge together. It supports people living with serious illness so they can keep living.

Living With Brain Cancer

I was first diagnosed with a brain tumor when I was 12 years old. Ten years later, I experienced my first recurrence.

I underwent surgery at 12, followed by radiation and chemotherapy when I was 23. With those treatments, we hoped to kick the can of cancer down the road by five, 10 or, hopefully, 20 years.

But only two years after finishing radiation and chemotherapy, and nine months into my first year of medical school, I was diagnosed with another recurrence.

This time, surgery and genetic testing revealed that my tumor had evolved into a more aggressive cancer: grade III anaplastic oligodendroglioma.

In other words, terminal brain cancer.

The only treatments remaining were untested options. I tried a targeted molecular therapy intended for leukemia, but it did not prevent further growth.

I then switched to a 10-day course of radiation followed by immunotherapy treatments every three weeks, which I continue to receive today.

Last year, Jeremy shared his patient story with us. Click here to learn more about his thoughts on living well with terminal illness.

[Jeremy during a radiation treatment, 2015]

The existential crisis of confronting my own mortality left me thinking deeply about how I wanted to live and what a peaceful end-of-life experience aligned with my values might look like.

I had the opportunity to attend the previous year’s End Well symposium as a patient ambassador. The speakers, attendees, caregiver ambassadors and fellow patients opened my eyes to the many creative and innovative ways we can transform how we understand and experience the end of life.

One area stayed with me because I had not yet reached the final stage of my own journey: palliative care.

I realized that palliative care could help me live my best life and reach the end on my own terms.

Entering Pediatric Palliative Care

Words such as “palliative care,” “hospice” and “end of life” are often associated with older adults. Rarely do we picture a child or young adult.

As someone who lived with cancer as an adolescent and now lives with it as a young adult, I wanted to understand what palliative care looked like for younger people.

Six months ago, I walked through the doors of a children’s hospital to spend the day with its pediatric palliative care team.

As I entered the pediatric wing, I wasn’t sure which “hat” to wear: medical student, former child with cancer or young adult living with cancer.

The attending physician advised me to embrace whichever identity felt most appropriate in each moment.

As we walked down the hallway toward our first patient, we stopped to let a boy pass. He was around 12 years old and used both a cane and an ankle-foot orthosis, or AFO, a type of brace.

I flashed back to my 12-year-old self in the hospital after a craniotomy, relearning how to walk.

I smiled and wanted to speak with him as a fellow patient. I wanted to show him the brace I still wear and reassure him that, despite his physical challenges, there were so many possibilities ahead.

A Bracelet and a Moment of Connection

We continued to our first patient, a young girl with a birth defect that affected her breathing.

She was connected to countless tubes used for breathing, delivering medication and testing her blood. She wore her hair in two ponytails. Although she could not speak, she responded to sound and physical touch.

Nervous, I stood in the back of the room while the attending spoke with her mother.

I wasn’t sure what to say, how to behave or what I could possibly do to make the situation easier for the girl or her mom.

During a moment of silence, I noticed a beautifully colored bracelet on the girl’s left wrist and mentioned it to her mother.

She smiled and told me she had made it for her daughter. It was a form of connection between them.

I stepped closer to the girl, held her toe and told her that I loved her bracelet.

She smiled slightly and shifted in the hospital bed. Her mother smiled and interpreted the movement as a sign of affection toward me.

I smiled back, my way of saying thank you.

Making a Child’s Death as Loving as Possible

One of our final patients was a boy with a genetic condition affecting his lungs and other organs.

He had been in and out of the hospital but had been transferred to this specialty facility because he was likely to die soon.

He could not speak, but he could move and open his eyes. His mother stood beside his crib while his older sister sat nearby, drawing in a coloring book.

Four stuffed animals surrounded the boy. They came from a storybook his mother had found to help explain death to children. Each animal represented a member of their family.

As she read the story aloud to us and to her son, I held his left big toe, which was covered by a tiny sock.

He opened his eyes and looked in my direction as his mother read.

It was one of the most heartbreaking and beautiful moments I had ever experienced.

We knew this boy would soon die, but his mother was courageously working to make his death as loving as possible for him and their entire family.

After the story, we all had tears in our eyes. I told his mother how much strength she had.

We discussed additional ways she could preserve the story of her child’s life, as well as support services for his siblings.

Throughout the conversation, I held myself back from crying.

Seeing My Own Mother

After leaving the boy’s hospital room, the attending physician and I debriefed.

We talked through his case and everything that had happened during our conversation with his mother.

As we spoke, I realized that my emotions came from seeing my own mother in her.

I saw my mother’s resilience and courage. I imagined what it might look like when I die.

On my way home from the hospital, I could no longer hold back my tears.

Witnessing the extraordinary strength of the patients’ families brought all of my emotions to the surface. The bracelet, the stuffed animals and the many ways these families were coping with their children’s end-of-life experiences filled my heart.

Palliative Care for the Whole Family

One year earlier, before my surgery, I wrote my will.

I felt at peace with it, and I had already spent a long time confronting the reality of my mortality.

Although the moments before my death will be sad and likely frightening, I know how I want to live until the very end.

What I had not fully considered was my family, both while I am living and as the end of my life approaches.

My experience with these families reminded me of my own family’s strength, especially my mother’s.

My family supports me while enduring the reality of my long-lasting and ultimately terminal illness.

Their experience may be even harder than mine because I am the one receiving most of the support from my family, friends, community and healthcare system.

They are not.

The young patients I met were too young to guide their families through the process, so their mothers often took charge.

I am old enough to walk alongside my mother and the rest of my family throughout my journey.

I can make sure we are all on the same page. I can make sure that I am not the only one receiving palliative care, but that they receive it too.

For me to end well, I need to know that they will have the support they need and that they will be included as equal partners in my end-of-life experience until my final breath.